Coordinating Specialists

"A doctor who cannot take a good history and a patient who cannot give one are in danger of giving and receiving bad treatment." (Author Unknown)  Experience has taught me a lot that I didn't know about being the mother of a patient.  The most important lesson that I have learned is that you have a short window of time to describe a medical concern before the doctor tunes you out and decides for himself exactly what is going on.  When you are being shuffled between various specialists' offices, it is even more important to have your facts and your thoughts clear.  (I keep a notebook.)

As I have discussed recently, my youngest son has been in the midst of an ear infection/asthma flair for a couple weeks/months now.  His primary doctor evaluated the situation and prescribed treatment three times.  After the third visit, he referred us to our pulmonary specialist.  Our pulmonary specialist in turn altered and extended the treatment started by our son's primary doctor.  He then referred us to an ear, nose, and throat (ENT) specialist and a pediatric gastroenterologist to try to determine the source of our son's ongoing asthma flair.

The ENT specialist briefly reviewed our son's medical history; gave him a short exam; then determined that his ear appears to be healing.  As she put it, "That is a chronically ill ear.  It looks retracted and sick but actually seems to be healing."  She stated that she can't believe he doesn't have some hearing loss by looking at the ear in question.  I explained that he had just had a full audiology exam and has perfect hearing and is actually hypersensitive to sound.  She just shook her head.  You've got to laugh.  Once again, the little guy is defying the odds.

One of the frustrations of going between different specialists for related issues is the lack of coordination between these different departments.  When dealing with specialty departments, you take the first available appointment or you may wait for months to get seen.  Because they are fitting you in as soon as possible, it's almost impossible to coordinate different appointments for the same day.  As a result, you end up taking a lot of time off from work and school to try and make these appointments. 

Thanks to modern technology, doctors and specialists within the same medical system are able to share their notes with one another through the computer.  This sharing of information and opinions should help save time if the doctors have done their homework and read the notes before coming in for the appointment, and if  the doctors have clearly and completely documented their information, treatment, and recommendations.  Those are some pretty big ifs.  It becomes your job, as the parent, to make sure all information has been provided, and provided clearly.  It is your job to clarify, explain, or expand upon the information needed to make the correct decisions.

Another problem with going between different specialists for related issues is that each doctor will be approaching the problem from her specialty's perspective.  For example, our son's primary prescribed newer antibiotics for ten day treatments because he knew how much medicine our son has been on and he fears over using antibiotics.  Conversely, our son's pulmonary doctor prescribed a month of Bactrim because he fears the length of treatment wasn't sufficient to completely clear the ear infection/sinus infection that may have been causing our son's asthma flair.  He primary concern, as a pulmonary doctor, was to get the airways less inflamed; knock out any existing infection; and regrow the injured cilia of the sinuses.  On the other end of the  spectrum, the ENT doctor said she would have recommended no antibiotics; use of a humidifier (which we already use and our pulmonary doctor said was not really necessary); and a nasal gel to address his nose bleeds.  She stated that some ear infections may take months to clear and that time and patience are the best treatment.  She did acknowledged though that a chronic asthmatic, once flared, can't wait months for an ear infection to clear.  They have to be able to breathe.  As a result, she concurred with the pulmonary doctor in both his treatment and the referral to gastroenterology.  If the ears continue to act up over the next month or so, she will see him back and probably put in his fourth set of tubes.  *Fingers crossed that this is not necessary. 

We have run into this conflict between specialties, time and again with our son with his developmental and medical issues.  The doctors say he needs a particular service.  The school says he needs something different.  His neurologist says his issues are neurologically based and nothing can be done but provide treatment for what develops with time.  The school says please get him assessed for an auditory processing disorder and a functional vision disorder.  His neurologist disagrees and says that is not needed.  Once again, everyone is looking at it from their own specialty. 

I'm looking at our son as his mother.  I love him.  I want the best for him, be it medically or educationally.  As his mother, I am his advocate, his voice.  When things are confusing or unclear, I try to make it make sense.  When communication is lacking, I provide the missing pieces.  I read and I research and I ask questions.  I make phone calls and I fight with insurance companies and I badger secretaries for information.  Through it all, I try to be polite, patient and compassionate to the individual who is just trying to do his job.  At the same time, I am his mother.  I will make sure that what needs done, gets done and gets done well. 

I thank God for the ability to be an advocate for my child.  I thank Him for the strength and fortitude to do what needs to be done.  I also pray for all the little ones who don't have advocates, who don't have a voice speaking for them.  Protect them Lord.  Cover them with your grace and protection.  Continue to watch over us and grant us wisdom, strength and guidance.